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Trish Low, RN, BSN   Coordinator, APDA Information & Referral Center, San Gabriel Valley, CA

Diagnosed at 39

My name is Trish, and I was diagnosed in March 2004, at the age of 39, although I am certain that I have had PD since I was 35. Along with the diagnoses of PD in 2004 I was also diagnosed with Chronic Lymphatic Leukemia - so my life has had its challenges.

I remember the day I was diagnosed. I was in the waiting room, anxious although I already knew and had feared it all along. The doctor lacked any bedside manner and got irritated with me when I was doing the Neurological assessment. I was trying real hard but was flunking. Then I remember thinking, "Why is he talking to my husband? I'm right here?!" He said I had Parkinson's and it became real.

You see this is not my first encounter with PD; my Dad was finally diagnosed at age 40. But back in the '70s there was no education of the patient or family, let alone Support Groups for Young Onset patients or their caregivers.

So, while I quickly educated myself, I had nausea and vomiting every day for six months on Requip. All the doctor kept telling me was that I would get used to it. When I lost control of my bladder he said that I must have a bladder infection, that this condition didn't meet the profile. But there is no profile! We are like snowflakes - PD affects us all differently.

In December 2004 I went to a Support Meeting at Huntington Hospital and Dr. Jai  Hyon Rho was the speaker. I spoke to him after the meeting and discussed my situation. I took his card and went back to my insurance company determined to jump through any hoops necessary to get to transfer to Dr. Rho.

After the first visit I was so happy! This doctor truly cared about his patients and I knew I was going to be OK! During the past five years he has seen me through a zillion drug changes (switching from one med to the next, increasing or decreasing dosages, etc.) and four DBS surgeries.

Just so you know what a unique case I am; I had my first (left side) DBS in March '06 and then the right side DBS in March '07. At Thanksgiving '07 I had a fall and broke my right foot and right stimulator so I had surgery again January '08. For whatever reason the lead on the left side broke and in February '09 I had my fourth surgery. I hope and pray that it was my last - the surgeon assured me that he anchored it really well this time. This last surgery was the hardest on me - edema, headaches, severe rigidity and tremor. Thanks to Jennifer, the NP, who worked patiently on the programming and Dr. Rho adjusting meds again I am still working, driving and being a mom and wife.

My passion in life has always been to care for people. Although a year ago I could no longer continue to work as a Neonatal RN, I have grown into my new role as a Coordinator for the American Parkinson Disease Association, still living my passion taking care of my fellow "parkies".

My advice is to live for today and be thankful for every small blessing. I know as my PD progresses that my Lord will give me the strength to continue to fight back one step at a time.

11 Comments

Thank you so very much for your insight. My husband who is 39 as well just was diagnosed 3 weeks ago. We are traveling to Seattle,WA to see a movement disorder clinic and my husband is so scared that they will not be able to do anything for him. May I ask you to pray for us and our son as we are so terrified of what is to come.Thank you and God bless you for the courage to share with so many.

carrie, Jun 25, 2011

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The more Educated you are the less scary it is.Remember that This disease affect us all differently. Its important to practice staying in the present!!!! The past is toxic and the future is unknown.As for your son, I can give you any advise until I known is age. I will pray for you and your family. I am now almost 13yrs with this disease and I
still have quality of life. I can go to church,do palates,
water exercises, dance.I have a 16y/o daughter .I am still
doing my own ADL's. Having to modify my wardrobe.
Two things I can contribute to my doing so well is one have a strong relationship with my LORD and two having a positive
out look.
If you would like to chat further my email is tricia_peter@
Yahoo.com

Trish, Mar 23, 2012

Trish! Thank God I found you! I have felt so isolated & abandoned by the docs! What we have in common: I am an RN/BSN Home Health case manager, diagnosed at 50 (last year)and Christian. PLEASE email me at pegreid0@gmail.com!

Peg, Mar 22, 2013

It is so comforting to find someone with such similar experiences to mine. I hate it that with my family and friends my Parkinson's trumps their problems. Once I was in a store and the clerk (a total stranger to me)said "I have a hangnail," and I said "I have Parkinson's disease." It's such a conversation stopper. It turned out that she had a brother with Parkinson's.

I have had DBS surgery once - I can't imagine going through that four times! I know that God won't allow more pain than we can endure, and as a Christian I have assurance that when this life ends, we get new bodies that will be young and strong again. Maybe I'll meet you there and we can dance.

Karen Gross, Mar 21, 2012

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I was diagnosed at the age of 30, I am 44 now.
I had DBS 6 years ago. Taking a lot less medication
Now.

James, Jul 31, 2012

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That's for reading my story. IT's true four times is enough
for DBS's. IT was three years ago that I had my 4th DBS surgery. But it seams years ago. I am now 48y/old and I am doing great with DBS and a ton of meds. But all that matter is that I am walking and functioning a my best level with my disease. I know that the experts say always"you need to
exercise". I always rolled my eyes,but now I am a believe in exercise . I do palates 3 times a week and dance 1 times
plus the BIG program too. Please do not despair we can have hope in your heart if you are with a higher power in your life/

Hi you two,, Oct 31, 2012

I was diagnosed at the age of 34, some 26 years ago. I had DBS twelve years ago and I am doing very well. Don't give up ! Keep fighting. That's my advice to every one.

Mireille, Sep 27, 2012

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Amen sister,you are not alone in the fight!

Trish, Oct 31, 2012

I was diagnosed with Parkinson's/Parkinson's Syndrome in December, 2008. A little over four years later, it is still inconclusive whether I have Parkinson's or PSP (which in my case is actually a good thing).

I think I experienced the initial shock and depression that any person does when being diagnosed with an illness. The depression I experienced after the diagnosis was unlike anything I had experienced in my life; it was overwhelming. But gradually, with the help of family and an anti-depressant, I climbed out of it, and I was able to return to work.

Although I would not wish this experience on anyone, I found an inner strength that I did know I had. I truly do appreciate every day now. People who are healthy think that this expression is a cliche, but those of us with Parkinson's know that it is not.

I admire the faith and courage that I see in other people with Parkinson's. I try to draw inspiration from that, and I hope I can strengthen my faith as my symptoms progress (hopefully slowly).
Thanks for your posting, Trish. It was very helpful.

Mike, Jan 27, 2013

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My symptoms began at the age of 34. I was finally diagnosed 3years later. I had DBS in 2007, on both sides. In 2010 I had a right side revision. Until last year I did not need medication due to the success of the surgery.

I fell aftter tripping over a seam in a sidewalk. That fall led to knee replacement and 2 shoulder surgeries. I am having Botox injections next week because of the dystonia in me left foot and arm. Sometimes the cramping in those areas is too much to bare. I am praying thes does the job.

Has anyone else had an experience with Botox for PD?

Kim, Apr 25, 2013

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WHAT AN AMAZING STORY. I THOUGHT THE RBD, SOMNAMBULISM AND INSOMNIA, NEURGENIC BLADDER, SMELL, TASTE,AND GAIT WERE A WEIGHT TO DEAL WITH, BUT THE LOOSING OF THE LEADS. I CONTINUE MY RESEARCH FOR THE DBS, I CONCERN MSELF WITH THE IMPULSE CONTROL DISORDERS, AT THIS JUNCTURE LIVING IN RENO, NEVADA: GAMBLING, PROSTITUTION. TWO OF THE DEVILS ADVOCATES FOR NEVADA. AS WELL, MY 'BS DETECTOR' FOR PONZI SCAMS IS WWWWAY WWWAY OFF!!!THANKS FOR SHARING....

JAMES SHOWERS JR, May 19, 2013

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